Full Project 1: WeCanManage: An mHealth self-management tool to empower survivors with disabilities due to the long-term effects of cancer and its treatment

摘要 据估计，美国有1690万癌症幸存者。大约40%的癌症 幸存者长期生活在癌症和癌症的身体、认知、心理和社会后果中。 治疗，这反过来又可能导致长期残疾。研究表明，自我管理干预 可以帮助人们，包括癌症患者，获得管理症状所需的知识和技能 比如疼痛、疲劳、焦虑和情绪低落。通过智能手机提供自我管理干预 应用程序(也称为mHealth应用程序)可以将自我管理工具提供给需要它们的人 大多数人，包括癌症幸存者和残疾人士。到目前为止，还没有mHealth自我管理应用程序 为满足残障癌症幸存者的需求而开发的。这项研究的目的和 开发研究是开发一款创新的mHealth应用程序，名为WeCanManage(WCM)，以增强癌症的能力 残疾幸存者积极主动地将癌症及其后果作为一种慢性病加以管理。这 以社区为基础的参与性研究项目将分两个阶段进行。在第一阶段，我们将使用用户- 以设计流程为中心，与幸存的科学家团队合作开发WeCanManage工具 (基层癌症幸存者社区成员)谁将作为联合研究团队参与研究团队 WCM工具的研究人员和共同开发人员。在第二阶段，我们将评估可行性、接受性和 癌症幸存者对WeCanManage应用程序四周参与期的用户满意度 残疾(n=60)。这一严格的开发和评估过程将为未来的临床奠定基础 试探性研究。残疾人是一个未被认识到的健康差距人群，往往被排除在外 从癌症健康公平议程中。事实上，癌症幸存者表示，他们的长期残疾需求是 在整个癌症护理和生存连续体中没有得到充分的解决。WCM研究项目是一个 有机会增进癌症社区对这一人群的了解，并提出证据- 知情的干预措施，以更好地满足癌症和残疾双重打击的人的需求。 对癌症和残疾交界处的人进行的严格研究扩大了芝加哥癌症健康 Equity Collaborative对服务不足社区的影响，并使其成为包容性和 平等对待所有人，即使是那些因残疾状况而被边缘化的人。

ABSTRACT There are an estimated 16.9 million cancer survivors in the United States. Approximately 40% of cancer survivors live with long-term physical, cognitive, psychological and social consequences of cancer and its treatment, which can in turn lead to long-term disability. Research indicates that self-management interventions can help people, including those with cancer, acquire the knowledge and skills needed to manage symptoms like pain, fatigue, anxiety and decreased mood. Delivering self-management interventions via smartphone applications (also called mHealth apps) can get self-management tools in the hands of people who need them the most, including cancer survivors with disabilities. To date, no mHealth self-management apps have been developed to meet the needs of cancer survivors with disabilities. The purpose of this research and development study is to develop an innovative mHealth app, called WeCanManage (WCM), to empower cancer survivors with disabilities to proactively manage cancer and its consequences as a chronic condition. This community-based participatory research project will proceed in two phases. In phase I, we will use a user- centered design process to develop the WeCanManage tool in partnership with a team of survivor scientists (members of the grass-roots cancer survivor community) who will engage with the research team as co- researchers and co-developers of the WCM tool. In phase II, we will evaluate the feasibility, acceptance, and user satisfaction with a 4-week engagement period with the WeCanManage app among cancer survivors with disabilities (n=60). This rigorous development and evaluation process will lay the foundation for future clinical trial research. People with disabilities are an unrecognized health disparities population and are often excluded from the cancer health equity agenda. Indeed, cancer survivors indicate that their long-term disability needs are inadequately addressed across the cancer care and survivorship continuum. The WCM research project is an opportunity to enhance the cancer community’s understandings of this population and to develop evidence- informed interventions to better meet the needs of people with the ‘double whammy’ of cancer and disability. Rigorous research with people at the intersection of cancer and disability expands the Chicago Cancer Health Equity Collaborative’s impact on under-served communities and distinguishes it as a leader in inclusion and equity for all people, even those marginalized by their disability status.